Our Son, Our Hero

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Written by Ingrid B. on 31 Oct 2007

A few evenings ago, I stood with the small group of moms in the lobby of my childrens' dance school and peered through the window at my son's beginner ballet class. I watched nine-year-old Mark hobble and hop and try to balance on one foot. I watched him plie and sweep his arms up and over his head, his tongue sticking slightly out of his mouth like Charlie Brown's when he concentrates. I watched him stumble and right himself over and over as he tried to master first position. It would have been clear to a casual observer that he was having a harder time with these basic steps than any other child in the class. Maybe they would have thought he was a bit clumsy, or just not terribly agile. Me, I thought he was a hero.

Trying something new takes courage for everyone, but for Mark, taking this dance class represented an even greater act of bravery. Born with Spina Bifida, Mark lacks nerve function in most of his lower leg area. Things like balancing on the balls of his feet seem at first to be nearly impossible. At age nine, his gait is still awkward, and though he can walk and run without the braces he wore when he was younger, he falls often. But while he gets frustrated from time to time, he has never let his Spina Bifida stop him from trying anything that interests him. He pushes himself, he shoots for the moon, and why shouldn't he? He has proven to be a survivor from the time he was born, and abandoned, in a hospital in southern Russia . Surgery was performed to close the opening on his spine, but with no parent to comfort him, it must have been frightening. An early videotape of him at two months shows him wearing a tiny hospital gown that was open in the back to reveal a still raw-looking scar. Then the man holding him lays him onto a rough rattan mat, face up, causing him to wince and try to roll back to his tummy. It is clear he is in pain, or at least discomfort. This was just a glimpse of what his first months of life must have been like.

At three months, he was sent to the local orphanage for babies and toddlers. The 150-bed facility was hardly stark, in fact cheerful murals covered the hallway walls, and musical toys and rattles filled the shelf in the director's office. But with staff and basic supplies seriously lacking, it was far from an ideal place to spend the first years of life. Babies mostly lay in their cribs, one-on-one attention simply wasn't an option in this environment. Diapers weren't available, so babies were swaddled and cleaned periodically. Bottles were propped against crib bars for feedings, out of necessity as opposed to indifference. But the result was that if the baby let go of the nipple and the bottle slipped out, the feeding came to an unceremonious end. And food was scarce enough as it was, meals consisting mostly of watered-down potato-based formula. Medicines too were sparse. Vitamins would have been a luxury. Most babies were underweight, and many rocked themselves to sleep or stared at their hands for entertainment and comfort.

We were somewhat familiar with this orphanage, as it was the one from which we had adopted our daughter Grace two years earlier. And it was through the same agency that we had used that we came to learn about our little guy when he was just seven months old, then a legal orphan and in need of a family to give him medical care and love. Our daughter had been born with some challenges of her own, needing three early surgeries on her digestive tract, so we knew that the love and joy of helping a special child blossom far outweighed the difficulties. We decided we would consider adding this little boy to our family.

When we first took Mark's video to a doctor who specialized in international adoption, her verdict was not good. She pointed out that, although many orphanage babies are underweight, this little guy was actually losing weight. He appeared malnourished his tiny arms and legs stick-like. His forehead bulged noticeably, a sign, we soon learned, of the vitamin D deficiency known as rickets. The doctor also informed us that, although it didn't state the name of his condition on his medical report, it was clearly Spina Bifida. She laid out the possibilities starkly: he might not walk. His legs moved now, as seen on the video, but he might actually lose function if his spinal chord tethered as he grew, a common condition in kids with SB. He most certainly would be incontinent, and would need to drain his bladder with a catheter as almost all people with Spina Bifida do.

And there was more: she felt he was not responsive enough when spoken to, or when a toy was waved in front of his face. She wondered why. Was he being more severely neglected than other babies there, because of his disability? He was surely in the lying down room of the orphanage the room for those who have a physical ailment or condition that will eventually lead them to life in an institution. And children there, we were told, had an even rougher go of it than kids in the main rooms. They weren't taken out of doors for fresh air. They weren't taken out of their cribs much at all. Expectations for them were not high, as attitudes about those with physical disabilities mimicked those that reigned in the United States not so many decades ago.

It was a lot to swallow. We stumbled backward at first, but within days we had regained our footing and felt sure that we had been led to this little person for a reason. We set out to learn all we could about Spina Bifida, while we hurried to update our homestudy and file the reams of paperwork with which we were so familiar from our first adoption. Although the whole thing took only four months from start to finish, time seemed to move in slow motion. The update we received halfway through the process was not encouraging: at ten months, he weighed only 11 pounds. Something was very wrong, and we prayed he would be all right until we could get to him.

Finally, in June of 1999, we brought Mark home. In addition to being tiny, he was a very serious little guy. With some effort we could make him smile at our antics, a wide, beautiful, knowing grin that spread across his face and lit up a room. He smiled easily when his older sister was in sight, though, clearly comforted by her presence. She soon learned to dance, run and tumble for his entertainment. For his part, he was just learning to scoot forward and sit unassisted, but he took delight in watching his sister's lithe movements, as if she were running for both of them.

We quickly realized why he was so underweight nothing he ate stayed in him. Food allergies and intolerances were soon diagnosed. We were told to give him soy formula and things like rice cereal and applesauce things that were easy on his exhausted and traumatized digestive system. Slowly, we added a variety of foods back into his diet.

Mark was ravenous at first. He absolutely devoured any food put in front of him. In fact, several times we had to stop him from stuffing his mouth so full he would gag. Eleven months of near starvation had left their mark on him. We tried to reassure him with regular meals, plenty of healthy foods, and bottles in the rocking chair (something I knew he had missed out on in his first year). His insecurity did not fade quickly, but his physical condition changed at a rate that can only be described as astounding: in three months he nearly doubled his weight. He soon looked like a little linebacker almost unrecognizable as the frail looking baby we had brought home just months before.

Mark started to come out of his shell, ever so slowly. He liked rocking back and forth in tune to music, and would dance in his highchair when we sang to him. He seemed curious, and although he could not speak a word, he studied the world with a steady and purposeful gaze. From the beginning, we saw an admirable sense of determination. For six months, from the age of one year to 18 months, he would pull himself up to standing at the coffee table. And for six months, he would try to step away from the table. Every time he did, he'd fall. But finally a few days before Christmas, he prevailed. He stood and took two very shaky steps before collapsing, triumphant, onto the carpet.

For the next several years, he received speech and physical therapy through the State's Early Intervention program. Daily stretches, combined with low level braces known as AFOs, helped him walk and run, and he proved to be an avid, if not terribly steady, climber. In addition to his physical challenges, his expressive language was significantly delayed. Tests showed what we already knew, that he understood everything we said to him, and was in fact comprehending things far above is age level. To alleviate his obvious frustration at not being able to communicate, his speech therapist began teaching him sign language at age three. Now he would have a new way to let us know his wishes, while our most fervent one, to know what was going on his little mind, was starting to come true.

As Mark blossomed physically and developmentally, his spirit began shining through the haze of his early life. He was, we learned, a most loving and gentle child. He adored babies, slowing down to stroke their hair, look in their eyes, hand them his toys. He clearly had a special place in his heart for animals, too. I had worried that his surgery in Russia , his long stay in the hospital, his unavoidable lack of food and attention in the orphanage, would all conspire to make a child who had, if not outright anger, at least an understandable mistrust of the world. But instead, our son seemed all the more acutely aware of the suffering of others, and hurried to comfort anyone who was sick or frightened. Perhaps most touching was his relationship with Gracie. She had been diagnosed with mild autism at age three, and it was Mark who proved most able to bring her back when she seemed to disappear into her own world. He would instinctively join in her repetitive play, slowly drawing her out until she was ready to interact with him. It was better than magic.

By Kindergarten, Mark had developed a clear love of science. He liked superheroes, building with legos, and hotwheels. He loved frogs and the color orange. He especially liked to help with cooking at home. I was glad for him to have interests that were not dependent on his leg-strength or balance. He could grow up to be a scientist, as he often said he would, or perhaps a chef. I was content. But Mark was not. He had plans.

At age five, Mark took an interest in karate. He began to ask for lessons. When his request went ungranted after about six months, he began to plead. I was hesitant, to say the least. Mark was still unsteady on his feet. Karate required balance and strength. Would I be setting him up for disappointment? He tended to be his own worst critic, getting frustrated when he was unable to do things as quickly or easily as others. How would he handle not being on even ground physically with the other children? I decided to wait until our appointment to see the Spina Bifida specialist at Shriner's Hospital in Springfield , Massachusetts . He was also an adoptive parent of two children with special needs, so I solicited his advice with particular interest. He said that, with the exception of football (which could truly put his spine in jeopardy), we should let him try whatever we would if he didn't have SB. That advice felt right to me. I had not been able to bring myself to tell my son not to aim for the sky. So, with a hundred prayers sent up that he would find more happiness than frustration, I enrolled him in our local karate school.

Our prayers were answered in the form of a wonderful karate instructor who took Mark's special needs in stride. He taught him to focus, to persist, to rebound after setbacks. He knew how to push just enough, and though he clearly came to care a great deal about our son, he never coddled him or gave him special treatment. Mark was thrilled to finally be doing karate, and his sister kept busy with dance in a nearby studio.

After about a year and a half of lessons, Mark achieved the hard-won status of orange belt. I blinked back tears as I snapped pictures of him kneeling before Master Duncan in the traditional ceremony.

I was proud of Mark for trying, and sticking with, something so physical. And I had learned a valuable lesson. It was not important to me that he have a sport. It was important to him. So with his continued study of karate and all of his myriad interests, we were more than satisfied to let things remain as they were. But once again, Mark taught us that he was not content to simply be a spectator. After several years of cheering on his sister in dance recitals and competitions, he decided he wanted to take tap lessons. Once again, I worried that he would become frustrated. Tap seemed so dependant on the exact sensations that he lacked: feeling at the bottom of the foot. Timing, speed, balance, all of this was part of tap. But the words let him try returned to me, and after meeting with the head of our daughter's dance studio, we all agreed that Mark should give it a go. He began tap lessons in the fall of 2006, and it was a beaming cheering section of family and friends that hailed his first recital that following spring. Mark had by then already expressed his next ambition: to be a member of the school's performing tap team. Impressed by his perseverance and focus, his teachers agreed to invite him to be a team member for the 2007/2008 season. But this would mean that in addition to tap classes and team rehearsals, Mark would need to take ballet. How would he do? History, and my son, have taught me to believe the best. After all, the seemingly impossible is already played out in his daily life.

Watching him struggle and rebound countless times in his dance class that afternoon, I suddenly felt proud beyond explaining. While others saw a group of students of various ages and abilities doing the familiar repetition of beginner ballet, I saw a little boy in a distant orphanage, physically frail, eyes searching the world for reassurance, and heard the words of the doctor who cautioned us against rushing into adopting him. She said we should be prepared for a little boy who wouldn't walk. She didn't tell us to prepare for a little boy who wouldn't only walk, who wouldn't be content with just one miraculous turnaround in his life. She couldn't have seen that one day, beyond anyone's expectations but his own, he would refuse to simply walk through life. He would insist on dancing.

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